Adolescent and Young Adult Breast Cancer
Listen to the episode to hear Dr. Johnson discuss:
why the number of younger women diagnosed with breast cancer is going up, as well as the size of the increase
issues that are more challenging for younger women with breast cancer
reconstruction options for very young women
her advice for a newly diagnosed adolescent or young woman
Dr. Rebecca Johnson is a pediatric oncologist/hematologist at Mary Bridge Children’s Hospital in Tacoma, Washington. She specializes in treating childhood blood disorders and cancer in kids, teens and young adults. While at Seattle Children’s Hospital, she founded the adolescent and young adult oncology program, and is building a similar program at Mary Bridge.
Dr. Johnson was diagnosed with breast cancer when she was 27 years old. This personal experience helped shape her research interests, which include patient engagement, cancer epidemiology, and unmet needs and barriers to care among adolescents and young adults. In 2021, Dr. Johnson and colleagues wrote a clinical review of breast cancer in adolescent and young adult women that was published in the Journal of Oncology Practice.
— Last updated on August 24, 2022, 10:24 PM
Jamie DePolo: Hello, thanks for listening. Our guest is Dr. Rebecca Johnson, a pediatric oncologist/hematologist at Mary Bridge Children’s Hospital in Tacoma, Washington. She specializes in treating childhood blood disorders and cancer in kids, teens, and young adults. While at Seattle Children’s Hospital, she founded the Adolescent and Young Adult Oncology Program and is now building a similar program at Mary Bridge. Dr. Johnson was diagnosed with breast cancer when she was 27 years old. This personal experience helped shape her research interests, which include patient engagement, cancer epidemiology, and unmet needs and barriers to care among adolescents and young adults.
Earlier this year, Dr. Johnson and colleagues wrote a clinical review of breast cancer in adolescent and young adult women that was published in the Journal of Oncology Practice. She joins us today to talk about the distinct challenges faced by young women, aged 15 to 39, who’ve been diagnosed with breast cancer. Dr. Johnson, welcome to the podcast.
Dr. Rebecca Johnson: Thank you so much for having me.
Jamie DePolo: In the paper that you published, you said that the number of young women diagnosed with breast cancer has gone up since 2004. Do we know the size of this increase, as well as the reasons why the number is going up?
Dr. Rebecca Johnson: The size of the increase, yes. So, currently, over 12,000 young women under the age of 40 were diagnosed with breast cancer in 2020, and that’s gone up from 11,000 or less in the last decade. So it’s almost a 10% increase and continuing to rise, unfortunately. And many other Western countries have also documented an increase in the number of young women getting breast cancer. For example, France reported this a few years before the United States. And so this is not just something happening in America, but likely something happening in Europe and possibly worldwide.
And as for the reasons for this increase, it’s really kind of interesting because it’s a very rapid increase in a short time. And there is a strong tendency to think, “Oh, could it be a genetic factor,” and maybe it’s the genes of young women that are doing this, but the rapid rise in breast cancer, and the particularly concerning rise in metastatic breast cancer at the time of diagnosis — so, breast cancer that has already spread to distant organs when women are diagnosed — that is a huge problem. And in fact, the number of women under the age of 40 who are diagnosed with metastatic breast cancer when they’re diagnosed has tripled since the 1970s, and that number has just steadily gone up, and, in fact, exponentially increased.
And so, there’s more breast cancer overall, and there is quite a bit more metastatic breast cancer at diagnosis than there used to me in young women, and so, that change in 10 years, in 30 years, is way too fast for any kind of a genetic change in the population, which leaves two possibilities. First of all, is there a change in some sort of a lifestyle-modifiable risk factor? The big thing that’s changed in America since the 1970s is the obesity epidemic. However, obesity itself is not a risk factor for breast cancer in young women, per se, as it is in older women. So there may be subtle influences of obesity on breast cancer risk in young women, like maybe it is partially or all accounting for the increase in metastatic disease, nobody knows. So, lifestyle factors such as caloric intake, alcohol intake, smoking, exercise, all of those things affect breast cancer risk, and all of them could have potentially changed in our population and therefore changed the incidence of breast cancer in recent years.
Another thing is that the chemicals that we’re exposed to in the environment are changing over time. When I first was writing about young adult breast cancer, I went to the medical literature and looked around to see what changes there have been over the past several decades and how we know the chemicals that we’re exposed to are safe. And, in fact, there’s remarkably little literature on that, and so that’s another possibility, is that there’s something in our environment that didn’t used to be just a few decades ago and that’s predisposing to cancer. So, that’s pretty concerning and, in my opinion, not as well studied as it might be.
Jamie DePolo: Yeah, that’s pretty frightening, and I want to make sure if I’m interpreting what you said correctly. It sounds like proportionately, there is more metastatic disease now at first diagnosis in young women than — I want to make sure I say it right — like the amount of metastatic disease, the increase in that is larger than the increase in earlier stage breast cancer in young women. Am I understanding that correctly, or no?
Dr. Rebecca Johnson: The most dramatic shift in breast cancer incidence has been the increase in metastatic disease over the past 30 years. Now, fortunately, that’s a minority of women. Most women are not diagnosed with late-stage disease at diagnosis. However, young women, in general, are more likely to have disease that’s somewhat advanced than older women are. So, if you look at a population of women under the age of 40, two-thirds of them will have disease at stage II or III or IV, so they have at least some degree of spread to the local tissues, and possibly, distant spread, whereas only about one-third of older women have advanced disease of that type. It’s pretty dramatic.
Jamie DePolo: Yeah, that’s very scary, too, because — just in my experience — working for Breastcancer.org, a lot of our education is focused on older women, and we definitely have education for younger women, but that’s really the target audience for breast cancer prevention. You know, mammograms aren’t recommended by most groups to start until 40, so many of these younger women are being diagnosed with stage II and up disease. That’s really concerning.
Dr. Rebecca Johnson: It is, and to your point, it’s not a population that could benefit from screening because even though about 5% of breast cancer is diagnosed in women under the age of 40, that’s not enough to make population screening a useful and cost-effective intervention. And so people under the age of 40 will continue to be an unscreened population, unless, of course, they’re at very high risk from a family history or known genetic susceptibility to breast cancer, right? Those people could get screened earlier, but we can’t fix the problem by starting mammograms earlier, for example.
Jamie DePolo: Right. Yeah, it’s not a simple solution. Now, the other thing that’s concerning in your paper, it says that these younger women who are diagnosed also have worse survival compared to older women. Can you talk a little bit about that? Do we have any hints as to why that is?
Dr. Rebecca Johnson: Well, if you look at all of the population under the age of 40 who’s diagnosed versus all of the population over the age of 40, you start with the fact that the women under the age of 40 are more likely to have stage II, III, or IV — somewhat advanced disease at the time of diagnosis. Survival is highly correlated to stage at the time of diagnosis, and people with metastatic disease, of course, have by far the worst survival of any of those stages.
And so young women have all of the bad markers, when you look at them as a population. They’re more likely to have larger tumors than older women. They’re more likely to have higher-grade tumors — that’s where the cells in the tumor are dividing very, very fast. They’re more likely to have adverse biologic subtypes, like triple-negative disease that requires chemotherapy and has worse survival than some of the other subtypes. More likely to have vascular invasion than older women are. And so, they just have tumors that are bad actors biologically. No one knows exactly why.
Jamie DePolo: Okay. Now, is breast cancer in younger women treated differently than breast cancer in older women as a rule? I know you’ve just told us that the breast cancers are usually more aggressive, so obviously, that would — I’m assuming — lead to more aggressive treatment. But overall, if younger women — say a younger woman, and say somebody who’s 21 and is diagnosed with breast cancer comes to see you versus somebody who’s 71 — is the treatment plan automatically different?
Dr. Rebecca Johnson: In most ways not. So, the main driver of decisions about chemotherapy and management of breast cancer is the tumor itself, not the age of the woman. However, in the youngest women, the clinician might have more of a suspicion for distant disease, for example, and so they might be somewhat more likely to look for that than they would be in an older woman, and that would be appropriate. But then, you know, once the tumor is classified, what stage it is, and all of the biological characteristics, the treatment is not usually different from that of older women.
Young women with aggressive cancers, however, are probably more likely to get ovarian suppression. Most cancer is diagnosed in the post-menopausal period, and women, of course, are still having menstrual cycles, as a rule, under the age of 40. And so ovarian suppression and whether that’s needed is something that is a particular thing to consider in young women that are still having menstrual periods.
So, all in all, the treatment’s not likely to differ substantially just because a woman is young, but one needs to look carefully to make sure there’s not spread of disease that is unrecognized and think about the special factors because the woman is still cycling.
Jamie DePolo: Sure. Now, would a younger woman — I guess I’m thinking, especially, of somebody who’s, say, 15 to 20 — would that person be referred to a pediatric oncologist versus a general oncologist?
Dr. Rebecca Johnson: In my experience, often yes, but not always. So, I work in the pediatric oncology setting, and I have been referred and worked up new diagnoses of young women with breast masses, and usually the only ones that are referred to pediatric oncologists are teens, usually under the age of 18.
In my mind, adult centers that offer coordinated, multidisciplinary care and specialize in young women with breast cancer are well equipped to take care of breast cancers. The imaging is really an important factor. Pediatric centers are not very good at breast imagining because they don’t do very much of it, whereas adult centers are really, really good at it. And all of the protocols for treatment of breast cancer are adult-type of protocols.
And so, I think that treatment in the pediatric setting is appropriate because the psychosocial support systems that we can offer in the pediatric setting are a bit different than for adults. We have child-life specialists and teen support groups and things like that on the pediatric side that wouldn’t be available, probably, to someone who is treated on the adult side. When there’s a teenager… teenagers really very rarely get breast carcinomas, and when they do, I think they should be treated jointly by a pediatric oncologist with definite, frequent oversight by the medical oncologists to determine the treatment protocol.
Jamie DePolo: Sure, and I think that’s a good point that you bring up about the support groups because I would have to imagine somebody who’s 17 or 18 who’s been diagnosed with breast cancer might have a hard time with a typical breast cancer support group if most of the people are in their 50s or older. Everybody’s going to have such different priorities so that that makes a lot of good sense.
Dr. Rebecca Johnson: Yeah. I was diagnosed with breast cancer myself in my 20s and treated at an adult center — actually, the place I was doing my residency — and they offered me a support group, and I asked, “Well, who’s in it? Is there anyone my age whatsoever?” And they said, “No, a lot of people are older. In fact, everyone’s older, and they like to show each other pictures of their grandchildren,” and I said, “I’m never going there.” You know, it didn’t seem helpful in the very least.
Jamie DePolo: Sure.
Dr. Rebecca Johnson: So, yeah, I think that for psychosocial support, getting age-matched peers, really regardless of diagnosis, can be helpful. If you have enough people to talk who are of a similar age and also have the same kind of cancer that’s nice, but to some degree, just going through cancer at all at a given age — as a teen or as a young adult — sort of brings people together in a way and gives them a lot to talk about.
Jamie DePolo: Absolutely. So, that sort of leads into my question about some of the issues that are more challenging for younger women with breast cancer. I believe you said this in your paper, and I’ve seen it in other places, too, that compared to older women, younger women always seem to report worse quality of life. So, again, do we know what’s going on there? Why does that happen? Is it because the cancer is more aggressive and these younger women are getting more aggressive treatments with more aggressive side effects?
Dr. Rebecca Johnson: It’s interesting and probably a question with a multifactorial answer. So, it’s probably for many reasons that this is happening. In general, young adults with cancer and adolescents with cancer have a lot more complaints — I guess you could say they report a lot more problems than older people with cancer. They have more treatment-related nausea. They have more fatigue. They have more problems doing their thing, going to school, going to work, which may actually relate to the fact that they’re just doing so much and so active normally at that age, and they report worse quality of life than older people who have cancer. Again, those older people may be less derailed by a cancer diagnosis than a college student who has to drop out for a year and then go back.
And so there are many reasons hypothesized as to why that is, but nobody knows. But one interesting feature I wanted to make sure to mention is that young women with breast cancer are even worse than the rest of the pool of young adults with cancer in terms of decreases in their quality of life during and after cancer treatment. So, young women with breast cancer report among the worst quality of life if you compare them to their peers with other types of cancer — certainly if you compare them to their peers without cancer or even if you compare them to older women who also have breast cancer. Again, nobody knows why that is, but as a survivor and as someone who’s worked in this field for a while, I have a few ideas.
First of all, I think that quality of life can be decreased in young adults with cancer because the experience is really isolating. Their peers don’t have any experience often with illness whatsoever, so they’re not great at being supportive. You know, they’re sort of running around doing their own thing, and so it’s just a terrible time of life to be sick. To get cancer when everybody’s generally growing and moving forward — cancer can feel like a huge step back. People may have to move in with their parents again or be dependent in a way they never wanted to do, and so that’s one thing.
Another huge thing for young women, of course, is sexuality and fertility. Body image changes are really hard, and breast cancer, obviously, is often associated with surgeries that may dramatically change the look of the woman. When I went through my surgery, initially in my 20s, they told me, “Well, we need to watch your chest wall to look for a chance of recurrence for a couple of years.” And so I couldn’t have a reconstruction for quite some time after my diagnosis, which was really jarring, to have your body look so different. And so that may be one of the reasons.
Sexual health concerns, again, are not just present among breast cancer survivors, but among other young cancer survivors, so that may be one thing, and concerns about being able to be a parent are very common among both men and women who are survivors of young adult cancer. Young women with breast cancer, in particular estrogen-responsive breast cancer, often are on tamoxifen and therefore told that they shouldn’t conceive for quite a long period of time after their diagnosis. So, that’s another thing that has the potential to be upsetting for people.
Jamie DePolo: Yeah, in the back of my mind, that’s a question coming up because, especially now, with some of the hormonal therapy — I mean, it was five years and then now they’re talking about ten years, so if you’re diagnosed when you’re 25, that’s 35. It’s up to age 35 where you can’t get pregnant, and that’s a long time. I mean, that’s usually the prime time — between, say, 20 and 40 — when people think about having children, so I could see where that would be a huge, huge issue.
Dr. Rebecca Johnson: Yeah. It’s really problematic, and there are studies going on right now to test the safety of stopping tamoxifen for a period of time during that ten-year period or five-year period in order for a breast cancer survivor to attempt to get pregnant and have a baby.
There’s an interesting phenomenon called the healthy mother effect, which shows that people who get pregnant after a breast cancer diagnosis don’t actually have worse survival. There’s a lot of hormonal fluctuations that clinicians and others are often really concerned about what the impact will be, but actually, women who do manage to get pregnant often do okay. Which has led to the question of, “okay, well, given that that’s true, would it be safe then to stop tamoxifen for a period of time if people’s reproductive window was running out and they’re really wanting to have a baby at that time?” And this is after completing a couple of years, at least, of the tamoxifen. So, those studies are still ongoing.
Jamie DePolo: Okay. Very interesting. And I do want to ask about fertility preservation, too, because from what I’ve read — and I know this isn’t the case everywhere — but sometimes it kind of gets forgotten in the rush of a diagnosis, we have to do everything we can to treat this cancer. And it’s not until maybe, say, chemotherapy or something’s going to start, and you think, “Oh wow, this is going to affect my fertility, what should I do?” And then all those options need to be explored. And I think sometimes people don’t feel there’s enough time to think it through and figure out exactly what they should do. What’s been your experience with that and with your patients?
Dr. Rebecca Johnson: Well, the prospects for being able to preserve your fertility as a young woman with cancer are really very much better than they used to be, particularly if you have a couple of weeks after diagnosis and before the start of treatment to work with. Again, when I was diagnosed in my 20s, one could not bank their own eggs and later defrost them to be fertilized by whatever sperm they chose. So, if you didn’t have a life partner with whom you could freeze embryos and perhaps later use them if you became infertile, then you had no choice. You could bank the sperm and create an embryo, but for a lot of younger women who haven’t chosen a life partner, that’s not really a very good option at all.
And so now, egg freezing is standard of care just clinically available, not experimental, and it works really well — perhaps even as well as freezing down embryos. And so it’s a nice option. The downside is that insurance doesn’t usually cover it. There are thousands of dollars of out-of-pocket expenses to get the hormones and do the actual procedures and freeze down the eggs themselves. Live Strong has a fertility preservation program that can help defray those costs somewhat, but there’s always out-of-pocket costs. And then on the backend, if the woman becomes infertile and needs to use those banked eggs, you have to do it with in vitro fertilization, which also costs tens of thousands of dollars.
So the cost is prohibitive for many people, but the option is there and women with breast cancer often have a couple of weeks to work with after their diagnosis. It’s not like leukemias where they’re diagnosed and immediately admitted to the hospital, and treatment starts within a day or two. In breast cancer, there’s often more delays, and so fertility preservation is important.
Now, the majority of the patients of a medical oncologist are elderly, and so the challenge is to get to an oncology team that recognizes, “Okay, here I have in front of me a young person who might want fertility preservation,” and have that addressed as one of the very first things that’s talked about. Young women, I think, benefit from at least a consultation early on with a specialty team that offers multidisciplinary care with a focus on young women to make sure they get urgent referrals for fertility preservation if they want to do that.
Another thing is to make sure they get genetic testing very early on after their diagnosis because that can inform women’s decisions about mastectomy versus lumpectomy. So it’s super important to get those results back as quick as possible, and to do that you need to send them out just very shortly after diagnosis.
Jamie DePolo: Sure. Sure. And while you were speaking, I was thinking about making those kinds of decisions, I mean, you’re in your 20s, you’re diagnosed with breast cancer, you have to deal with that. You may be in school. You’ve got all these other things going on, and then all of a sudden, you have to decide, like, “Oh, do I want to have a kid five or ten years from now? I don’t know. I hadn’t thought about it. I don’t have a partner.” It just seems like so much pressure to be put on top of somebody, in addition to everything else that’s going on, plus cancer.
Dr. Rebecca Johnson: Yes, it’s mind-blowing, and to try to do all the things that a young adult does, and also deal with insurance, and also deal with these different medical specialists is a lot. People of any age who don’t have a partner who is acting as a caretaker, those people are at risk for adverse outcomes from their cancer, even in elderly people. And young adults are the population, actually, most likely to live alone of all age groups. So in my mind, they’re at some risk for problems being able to adhere to the recommended therapy and just problems being able to get everything done by themselves without some help.
Jamie DePolo: Sure. Sure. No, I absolutely believe that. I do want to ask you about reconstruction options. Are they pretty much the same for younger women — the autologous, the implant? Is one preferable for younger women because of age? I’m thinking it’s got to be hard because a woman’s shape could change, and so if you’ve got this implant or this reconstruction done when you’re 20, is it still going to look good when you’re 60?
Dr. Rebecca Johnson: Right. So, it’s a really complicated decision, and there are many options more and more, and everybody’s choices about what to do are different. So it’s very important to, again, get to a surgical team that offers as many of the potential options as possible for reconstruction in order that the woman be able to choose.
You know, some elderly women, and, of course, some young women, too, choose against reconstruction altogether or don’t have reconstruction right away, which leads to worse cosmetic outcomes. And so, again, it is important to have a surgeon who is dealing frequently with young women. And sometimes now tertiary centers offer flap reconstruction, where they take belly fat or fat from your thighs and rear end and kind of transplant a whole piece of that, along with the veins and arteries that support it, to kind of reconstruct a breast that actually looks and feels more like a breast. So, that’s an option that’s come down the pike in the past decade or so.
You can get a silicone implant, and that’s another option, or one can get a lumpectomy and radiation therapy instead of a mastectomy. There’s the related question as to whether you’ll have a unilateral mastectomy on the affected breast, or some people will choose a bilateral mastectomy, because women who are very young at diagnosis have a really high incidence of breast cancer in the other breast over the course of their lifetime — like up to a third of women will have breast cancer on the opposite side from the initial diagnosis during the course of their lifetime. So, if you like, I will tell you what my choices were regarding reconstruction. Would that be useful?
Jamie DePolo: Sure. Yeah. If you’re willing to share, that would be great.
Dr. Rebecca Johnson: Yeah. I think for me and for everyone it was kind of a journey and took a lot of hard decision-making. So, when I was initially diagnosed, I was offered lumpectomy or mastectomy. The data was known, even back then — it was in the ‘90s — the risk of local recurrence is far higher in young women than in older women. Local recurrence being the cancer coming back in the breast where it was first diagnosed. And so, therefore, if you have a lumpectomy, if they take out just the cancer, the area of cancer itself and not the whole breast, then you need to have radiation therapy on that breast as well to give you the best chance of the cancer not coming back. Radiation is given both for younger women and for older women as a standard if you don’t have the whole breast taken off.
And so for me, I was a second-year resident in internal medicine in pediatrics, and I was working 80 or more hours a week and super busy, and so the idea of going to radiation every day for six weeks and sitting there and waiting in line, it just seemed terrible to me. Plus I kind of wanted the cancer off of me right then and there, definitively. And so, I chose to have a mastectomy. And again, they told me it was a high-risk cancer and they needed to watch the chest wall for evidence of recurrence for a couple of years.
So, I just had a prosthesis, like a silicone implant literally in my bra, which was cosmetically not terrible when dressed, but was a little suboptimal in the real scheme of things. So then, a couple of years later, when everything looked okay in terms of my health, the options I was given was, do I want a saline implant or a silicone implant? Those were the two things available at that time. So, I chose the silicone because it was supposed to feel more normal, less hard, less like a water balloon inside your body...
Jamie DePolo: Right, and I don’t mean to interrupt, but they didn’t offer you flap reconstruction with your own tissue? It was either a silicone or saline implant?
Dr. Rebecca Johnson: That’s correct, because the flaps didn’t exist back then. They didn’t have them in the ‘90s. It’s a newer technology.
Jamie DePolo: Got it. Okay.
Dr. Rebecca Johnson: So I chose the silicone implants because it seemed the better of the two, and it was fine when dressed. It was always — you know, I didn’t consider a bilateral mastectomy, and no one offered me one, interestingly, because I think there was a lot less focus at that time on young women in general. All of the literature at the time said, “Oh, breast cancer is rare in young women,” but nobody ever actually added up the numbers to realize that breast cancer is the most common cancer of adolescents and young adult women. It’s 30% of all cancer in [adolescent and young adult] women. So, if you compare it to cancer of the elderly, it’s rare, but it’s actually quite common among young adults as a type of cancer.
So, I think a lot more attention is paid these days to the special needs of young women. Currently, young women more than old women tend to choose bilateral mastectomy with reconstruction, particularly if they have a genetic predisposition to breast cancer, one of the BRCA genes or another predisposing gene, or if they’re really young, just to prevent having to go through the whole thing again and be diagnosed with cancer in the other breast later.
So, anyway, I went ahead and got a silicone implant. I think the cosmetic appearance of an implant is better if they can use the skin of the breast initially, and I didn’t have that because I had had a mastectomy and then they waited a couple years. So I had to have a tissue expander, and then I got the implant, and I was moderately happy with it. It was fine and much better than nothing, but it was nothing to...
Jamie DePolo: I was going to say that better than nothing doesn’t sound super great.
Dr. Rebecca Johnson: Yeah. It was okay. I feel so lucky to live and to have two kids, and I was able to breastfeed the two babies with my other breast. And it was kind of interesting because I had the reconstructed breast and everyone ignored it. You know, pretty much I ignored it, but it was just not interesting, it was slightly colder than the rest of my body, and the babies just ignored [it], too, and went for the one with the milk, and I think that that was sort of emblematic of how it works. It’s just sort of there.
Anyway, the other thing that they told me when I had the silicone implant was that it would only last for 10 years and I should get it replaced, kind of prophylactically, because the silicone would wear down over time. And I did not do that because who would go in with a breast that seemed fine and volunteer to have more surgery. I was then in my 30s and busy, and I had young kids, and I didn’t, and it seemed to be working fine.
Then when my youngest kid was 7, I was diagnosed, in fact, by routine mammogram, with a cancer in the other breast — because there’s a high chance of it, and I was getting my mammograms. Fortunately it was a lower grade, kind of more old lady-type cancer that was not as aggressive as the first one. It was a full-on second cancer, but that does happen. And for myself, I was really glad to have had the chance to breastfeed my kids. I was glad to have the other breast, but people all make their own choices, and a lot of young women, again, choose bilateral reconstruction upfront, and any choice is fine.
At that point, I chose to have the DIEP flap reconstruction because that technology was available and a possibility at that time. So, they went and took out the existing silicone breast [implant], and then they just did the DIEP flap and reconstructed both breasts. And they actually had a lot of trouble with the silicone implant because of the fact that it had kind of leaked, and it was kind of a mess in there even though it seemed fine to me. And so, they really don’t last forever, which is a bit problematic when you’re hoping to live for many decades after your diagnosis as young people are.
Jamie DePolo: Right, and you don’t want to be scheduling surgery every 10 years.
Dr. Rebecca Johnson: No, and so I think that’s something for young women to think about and to discuss with their surgeons because again, the technology of making the prostheses is probably improving over time as well. So, people should check into what the current projected life of their implant is, because that’s much more important for a young woman who will live for hopefully 50 years or more after her diagnosis compared to an older woman who may live a much shorter time because she’s older.
Jamie DePolo: Sure. Sure. Thank you for sharing that, that was very helpful. Now, kind of moving into prevention, because obviously, as you said, younger women can’t get screening, they can’t get mammograms. But what are the best things that these younger women can do to keep their risk of breast cancer as low as it can be? I know there are modifiable lifestyle factors, like alcohol and smoking, but what would be your advice as far as the three biggest things?
Dr. Rebecca Johnson: So, I think that all we have under our control are modifiable lifestyle risk factors, and also our exposure to environmental toxins. I think both bear significant consideration, not just among women, but among all young people, you know? In Western countries, the sperm count of men has decreased by a third in the past 10 or 20 years — some really strange things are happening, and again, far too quick to be a genetic change of some sort.
So, I think that thinking hard about what environmental chemicals are around us: is it plastic bottles? Disposable water bottles are something that is new since the ‘80s, and, in fact, this distant metastatic breast cancer has gone up since then. So, I’ve heard it proposed, well maybe it’s that, is it plastics?
Well, we don’t know, and to be honest, no one is out there studying it for us. Some environmental organizations are, but it’s not like the government is strongly funding these programs of research to see if big business should be encouraged not to do these things because they might protect public health — and maybe that’s happening somewhere, but I can’t see it by review of the literature related to young adults that have cancer, okay? So, I think that being careful about environmental exposure and thinking about that, for oneself and one’s family, is important.
Lifestyle has long been known to be important for breast cancer. So, not smoking reduces risk for breast cancer, both in young and older women. So, one shouldn’t smoke. Exercise, there are some small- to medium-sized studies that suggest that regular, vigorous exercise in adolescence and young adulthood is protective against breast cancer, and so that’s important to do. And particularly, I am interested in diet. After my second breast cancer diagnosis, I thought, “You know, something has got to change in my life, and what is it that I can do from where I stand to make my health the best that it can be?”
And so, after reviewing the literature, I decided to adopt a plant-based diet, because people on a plant-based diet tend to have lower cancer incidence in the beginning, better survival from different kinds of cancers, and in places where people mostly eat plant-based diets, long story short, cancer risks tend to be lower. In the breast cancer literature, there are small studies in which investigators have looked at different elements of the diet to see what role they play in breast cancer, and they all point back to the importance of a plant-based diet.
So, for example, red meat. Higher red meat intake has recently been found to be a risk factor for breast cancer, and in another study, they found that if people would substitute one serving of meat a day for, instead, a serving of beans, that that would decrease the incidence of breast cancer, or their chance of getting breast cancer, by about 19% — so almost 20%. So, just one serving of meat a day, substituting one serving of beans a day — and is that more beans or is that less red meat, they don’t know — but again, beans are part of a plant-based diet.
And then there have been some other studies that look at specific elements of the diet. Things that decrease your risk for breast cancer include eating more cruciferous vegetables, eating more citrus fruits, more tomatoes, more mushrooms. And small studies show these things, but again, those are plants. I think that people are pretty reluctant to hear that news.
There was a study that just came out [in 2021] about how every hot dog that you eat decreases your lifespan by about 36 minutes, whereas every serving of nuts increases it by 15 minutes. And I actually was delighted to see that anyone was doing large-scale studies of the elements of our diet and their impact on our health because again, big pharma does not want to fund those, they don’t care, and so it’s really hard to get funding and it takes a long time to observe people prospectively and figure out what their cancer risk will be and what their health will be like, and even, you know, do they live or do they die over a period of years.
I was actually really pleased to see that someone had done that, so I could tell my kids, “Hey, look, this serving of nuts I’m encouraging you to eat right now, that’s good for you, if you look at the population as a whole.” But interestingly, I read this scathing critique of that article in a prominent medical website where somebody said, “Well, can you even believe this ridiculous information, 36 minutes doesn’t mean anything to the individual.”
Well, no, it doesn’t, but it really does mean that the things you eat have a major impact on health, long story short. I don’t know if this person just likes their hot dogs, or what it was, but I think people are just resistant to hearing that they have to change their dietary patterns. And as an oncologist, I am surprised that we rarely suggest that people do, because it’s seen as, “Well, we couldn’t ask them to not eat their” insert-whatever-they-like-to-eat there, “because oh my gosh, they’re sick and it’s a comfort food.” Well, all right, but maybe what they’re eating has a major impact on their chance of being a survivor versus not.
There’s literature that I’ve seen in cancer journals, just over the past year, that the quality of the diet has an impact on people’s likelihood of getting mouth sores from their cancer chemotherapy and also of getting fevers and getting sick during the time when their immune system is so low after cancer therapy. And so I think diet does have a major impact on health, and it’s one thing that people can choose to do that will maximize their health.
So, you know, look at things that go into your body. Your food, alcohol, smoking. There’s no amount of alcohol that is thought to be safe anymore. The guidelines are definitely changing, and particularly, for breast cancer, all alcohol is bad. There’s no amount that’s just fine. So the best thing would be to be a non-drinker, nonsmoker with a plant-based diet who exercises a lot. And people’s willingness to do all of those things may vary, and that’s okay, that’s a choice, but I think that as healthcare providers, we should take a strong look at what we recommend to people because I do think the data are emerging that those things are important.
Jamie DePolo: Okay. Okay. Yeah, that’s all very helpful and good to know. Finally, one last question. As a survivor yourself of young adult breast cancer, what advice would you offer to another young woman who was recently diagnosed? Are there a couple things that you wish somebody had told you in the few days after you were diagnosed?
Dr. Rebecca Johnson: Yeah. The first thing, I think, is that they should consider referral to a tertiary care center that treats young adults with breast cancer, specifically, in a multidisciplinary care setting. They don’t necessarily have to get all their treatment there, but it’s important to go there quickly because, at a big center, they can tell you whether there’s a clinical trial open that might be relevant. And particularly for young women, or anyone, really, with a high-risk cancer, clinical trials offer the possibility of better treatment for this cancer than we’ve ever had before if you’re interested in a clinical trial. But you can’t start some other type of therapy and as easily switch to a clinical trial later on. So, it’s important to know what’s available to you as early as you can.
Also, fertility preservation is something that needs to be teed up almost immediately, and centers that treat young adults are better prepared to do that, often, than some community centers are.
And then the final thing is genetic testing, which needs to be sent off really early so that it can help the young woman and her team to help her make decisions about what sort of surgery she’s going to have.
So, consideration of clinical trials, fertility preservation, genetic testing. Again, if that is all seamlessly done at her local place, fine, but otherwise — and perhaps anyway — she should just ask for a consultation with whatever is the nearest medical center that offers specific services for young women with breast cancer.
And just an anecdote, I have a friend who was diagnosed with breast cancer back when I was living in Texas, about 15 years ago, and she had the biopsy, was diagnosed with cancer at this community medical center right in the middle of Houston — so it wasn’t a rural area or anything. And she was telling me the plan, and she said, “Well, the surgeon said I should probably begin chemo within a couple of months, and so I’ve had a referral to a medical oncologist, but I’m supposed to go…” and named some date six weeks in the future. And there really is data that has emerged between then and now that starting to treat the cancer as quickly as possible after diagnosis — ideally within the first couple of weeks — improves survival. So waiting a couple of months between surgery and the start of any chemotherapy in a young woman is totally unacceptable.
My friend was a professional but not a breast specialist, and she had absolutely no idea that that was a problem. So, I suggested that she go to a big center, and she got in and got things going much quicker. So, young women should know that time is of the essence for them, and if somebody gives them a time frame that seems not okay to them, they should ask around to see what medical resources are around and if somebody could do things quicker. And they should make sure to, again, look for possible clinical trials and seek genetic testing and fertility preservation right away if they want it.
And the other thing I would say for young adults is that there are lots of support services that are available that never used to be. And that is really nice, and it’s one of the things I’ve been delighted to see during my oncology career is just to see those support services grow up. Because when I was diagnosed in my 20s there, it was really hard to find a person my age to talk to, and now there are lots. And so there are several that offer online support, like Elephants and Tea. There’s one called The Cactus Cancer, there’s another one called Stupid Cancer, all of those offer online support.
There is one called Imerman Angels, in which both cancer patients or caregivers of any age — not just young adults but old or young — you can contact them and they will match you with somebody who has gone through the same thing. Being the caretaker of a cancer patient of a certain type at a certain age range, or, you know, being a young adult cancer patient, they have a whole bunch of volunteers who would be willing to talk or FaceTime or whatever, text, and just sort of provide support, like, “Yeah, I’ve been there and been through it, too.”
So, lots of great ways to find peer support. And as a young adult, I had to do my own searching to find some young women with breast cancer that I could talk to, but for me, it made an enormous difference just in kind of normalizing the experience, realizing I wasn’t alone, and that it was happening to other people, too, and that they were dealing with it, and moving forward with their lives as well. I think it’s really important to take the time and make the effort. You know, not necessarily right at the time of diagnosis, but whenever it feels right, and just sort of process your emotions. And talking to some people who have been through it can be helpful for that.
Jamie DePolo: Absolutely. Absolutely. Dr. Johnson, thank you so much. Your insights and your information have been so helpful. I really appreciate your time.
Dr. Rebecca Johnson: It was great to talk to you. Thank you so much for the invitation.